Para aquellos que han sido diagnosticados con una enfermedad crónica, usted sabe que puede ser bastante el proceso. Y la espondilitis anquilosante (EA) no es una excepción, sobre todo porque…
Pompe disease is one of those rare disorders that progresses steadily over the course of a person's life. Patients are lacking the enzyme that breaks down glycogen, and the build-up of…
Race and ethnicity is a touchy subject—and rightfully so—but that doesn’t mean it shouldn’t be discussed, especially in terms of healthcare. The fact is, certain genetic diseases pop up in…
Pompe disease an inherited neuromuscular disorder that is caused by certain gene mutations, particularly in the gene that makes acid alpha-glucosidase (GAA). In Pompe's most severe form, it's often fatal because…
A cure may be just around the corner for people who have hemophilia B. And anytime the word "cure" appears in a sentence with a disease state, there's cause for…
No puedo decirle cuántas conversaciones que he escuchado entre alguien vivir con una enfermedad crónica y un escéptico que simplemente está desconcertado por lo que están escuchando. Para muchos en…
Welcome to this week's Editor's Choice! This week we are highlighting this inspirational, beautiful mother who wants to spread her message. She's currently battling multiple sclerosis in a courageous and proactive way,…
Take Snoopy's advice, as hard as it may be sometimes, keep looking up. A little hope and positivity can go a long way!
In the world of bleeding disorders, Factor VII deficiency could be considered the “runt of the litter.” And in the “dog eat dog world” of chasing research dollars, it’s a…
Pictured: Dr. Jakub Tolar EB can make a lot of daily activities difficult and painful. Check out some tips and tricks compiled from presentations at the 2016 Debra CARE Conference.…
Finding the money to fund research and the development of treatment (and maybe even a cure) for most rare diseases is difficult for a couple reasons. Rare diseases are notoriously hard…
Cuando se tiene una enfermedad rara como la enfermedad granulomatosa crónica (EGC) y has pasado la mayor parte de tu vida siendo pinchado y cortado por los (esperemos) médicos bien…
Okay, here's what's terrifying to me—the fact that there are SO many rare diseases out there and science hasn't even begun to skim the surface of knowing how and when…
In a nutshell... Amyloidosis is a rare blood disorder that occurs when a person's bone marrow makes too much of a protein called "amyloid," which then collects in the body's…
This goes for peers and physicians alike, chances are if you are uncertain about some aspect of an illness the patients themselves can fill you in. Patients do so much…
Von Willibrand Disease (VWD) is a bleeding disorder, not unlike hemophilia A and hemophilia B. But don't be fooled. It's very different. It's also the most common bleeding disorder on…
The above photo is of Kristina by Sandro Georgi Photography. Check out Kristina's story of living with narcolepsy by clicking here. If you visit Patient Worthy or our Facebook page then…
Ahora en su quinto año, un equipo de ciclistas altamente motivados de Sandpoint ha pedaleado una vez más unos 3.000 millas arduas través de los Estados Unidos, participando en la…
Patient Worthy had the privilege of speaking with Vicky, who shared her story of being diagnosed and living with sarcoidosis. My case was outside the ‘normal’ perimeters because I was…
If you have a rare disease, you probably have days when you think: "I wish I had someone to talk to or email back-and-forth with... someone who understands exactly how I…
Idiopathic Pulmonary Fibrosis or IPF is a disease where the tissue in the lungs becomes scarred and stiff, making it harder for a person to breathe and preventing the lungs from properly…
It's easy to identify the times when a medical condition works against us. In the case of acromegaly, people may experience: fatigue, muscle weakness, severe pain, limited mobility, impaired vision,…
It’s always awesome to announce a new clinical trial, especially for something that could offer relief to people suffering from the rarest of the rare conditions. And rare doesn’t begin…
Si su médico le ha dicho que se podía comer pizza, carne y otros alimentos ricos en grasa al día es probable que registrarse para que la prescripción inmediatamente. Pero…
"From belonging to an healthiest elite organisation to being hit by a rare disease is a leap which is not easy to accept." What is it about stories? Why do…
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